Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Thursday, April 21, 2011

Growth Attenuation and the Law

A number of articles about the growth attenuation and Ashley X have been published that discuss the case from a legal perspective. I find these articles heavy going. None have impressed me and many seem to be authored by law students who latched onto a hot button issue. I will readily admit I am not a lawyer nor do I have a thorough grasp of the technical legal issues involved in growth attenuation. However it is my hope that the WPAS remains committed to protecting the rights of children such as Ashley and all others with a disability. I would think it is in the best interest of the WPAS and Seattle Children's Hospital to continue to work together since they reached an agreement. I am equally sure the WPAS nor Seattle Children's Hospital wants to see Washington State law is not violated again. One Ashley X from my perspective was too many. I do have cause for concern after reading a letter written by Jeffrey M. Sconyers, the lawyer that represents the hospital in the Ashley case. The letter I refer to was published in response to the Hastings Center Report written by the Seattle Growth Attenuation and Ethics Working Group (I have already delved into these findings).

Sconyers makes one factual correction to the Hastings Center Report. Sconyers notes Seattle Children's Hospital did not "agree to obtain a court order prior to any future medical intervention to attenuate growth in children with developmental disabilities". Rather Sconyers states "we agreed that we would not provide such intervention unless we had received a valid order from a court of competent jurisdiction, not subject to appeal, authorizing such intervention in a given specific case". Sconyers argues there is a difference. He wrote: "We recognized that as a hospital that stood to benefit financially from approval of growth attenuation treatment, we had an irreducible conflict of interest that made it improper for the hospital to seek court approval for the care. That responsibility rests with the parents or legal guardians of the child whose growth may be limited, not the hospital."

Let's not mince words here: the hospital is passing the buck. They passed the buck in the past and are doing so again. The hospital admitted error in the past, an error that cannot ever be corrected. Illegal treatment, illegal surgery, took place. Who was to blame? The hospital and the bad legal advice Ashley parents received. The victim was a little girl. Now we are being told by the hospital attorney that it is in the hands of the court. They have an "irreducible conflict of interest". The skeptic in me wants to note why they ignored this fact originally only to see it clearly today. Leaving that aside, do we really trust the courts to protect the rights of children like Ashley from the interests of their own parents? Need I detail the myriad of ways the court has failed people with a disability in the past. I suggest if you think i am biased read the work of Lenny Davis and the legal term "bending over backwards". In short, I have absolutely no faith in the court. Remove all the rhetoric that has surrounded Ashley X and the ethics of growth attenuation and it boils down to one thing for me: we as a society cannot target one population and absolve ourselves of a human rights violation. It is not about dignity, self interested parents, or doctors trying to help one little girl and her family. It is a clear case of bias, bias in which a specific population is considered somehow not fully human. The implications of this are sobering and dangerous.

2 comments:

Bravo! You've done an excellent job of cutting through all the spin & BS on this issue to come to the heart of the matter, viz., can, or will, a court-appointed guardian ad litem work in the best interests of the child, as they are supposed to do? It's a sure sign of a broken system when the answer is "maybe". Clearly, the U.S. government is entirely lacking in chivalry, because all too often, the poorest, neediest, and most powerless members of our society have no champions- no one to speak up for them & stand up for their rights. As an American, I feel ashamed and disgraced that the most vulnerable & powerless members of our society are mistreated so often. It is a black mark on the soul of America, which could be the world's most beautiful country. America has a beautiful soul, & the founding principles of this country are among the best & most chivalrous in the world. However, certain people *cough rich republicans cough* have distorted those principles, to the detriment of our fair country. What must happen, to remove the disgraceful stain on the reputation of our wonderful country, is that the wealthy & powerful must start thinking of people other than themselves. They must reach out a hand, not only to their fellow Americans, but to their fellow citizens of planet Earth, and work to defend the rights of the vulnerable & powerless. By so doing, America will become the strongest nation in the world, an example for all to follow. Once we embrace & protect all citizens, and give them, as our Constitution says, equal treatment under the law, then America will truly be that Shining City On A Hill. As President Roosevelt said, "Posterity will not ask us if we have added a little to the fortunes of those who have much, but if we have done much to add to the fortunes of those who have little."

This might be the first time I've disagreed with you. The girl is never going to be capable of making such choices herself, or I'd argue that it was wrong... but I think her parents had her best interests at heart. I dated a boy who lived with his family because as a unit they cared for his younger brother who, much like this girl, would never develop mentally beyond an infant. I watched his mother struggle to lift him while she cared for him, knew that she had ruined her back for life in all her years of loving care. I think if when he was younger, someone had said, we can do things to make his life easier, and yours, she'd have done it. It was even suggested that she take him off his ventilator, something she was outraged at. I view the surgeries to make Ashley's life easier as the equivalent of a feeding tube, or a trach. Maybe I don't know what I'm talking about, it wasn't my brother afterall... but I think the problem with something like this isn't what this girl has gone through, but what it sets a precedent for. Where will future parents choose to draw the line? That is what scares me. I empathize greatly with what her family must be going through, and I know all too well the scrutiny they face. Even as a foreigner to my ex's family, I often was hounded with, "Why don't they just take him off all his machines and let god take him?" or "If they're born wrong its gods way of saying they aren't meant to live." So in that, I agree. Its a media-lized story that people will seize on, see, and form a bias from... but for this one little girl, I think her parents did what they felt was right for her. I think what makes me the most sad is that this family was blessed with such a pretty little girl, and being a parent alone is hard enough, and all people can do is criticize them for their choices. Its hard to be put in the spotlight like that, I'm sure...